Wishing to be Frozen In Time

Frozen was released in November 2013, almost 2 years ago. It was a massive global success Children throughout the world sang “Let It Go” everywhere from their bedrooms to the streets.The box office receipts clearly indicate that there were repeat viewings while the movie was in theaters. Once the DVDs were released, parents endured countless repeat viewings. Parents and children alike learned the lyrics to all the songs. Some parents learned the lyrics reluctantly so.

My daughter Iris was 5 when Frozen was released. She liked it just as much as any other little girl. OK, she liked it perhaps a bit more than average. I for one would love to hear my daughter sing the lyrics of “Let It Go” once more. I will always remember Frozen fondly even though it is now fading from people’s minds.

I’m not a Frozen fanatic, but I have a very good reason for liking the film. Two years ago, my daughter could still sing the lyrics to “Let It Go.” Today, I have to coach her through uttering just the three words in the title of the song. The reason she can no longer sing the words is because she has a very rare disease called GM1 Gangliosidosis. This disease is a degenerative neurological condition that will ultimately take her speech and voice. This condition will also end her life if medical research does not advance in time to save her.

Frozen was released just 3 months following Iris’ diagnosis of GM1 Gangliosidosis. We had a truly wonderful Christmas that I will cherish always. It was a very Frozen Christmas. Iris received Elsa’s dress, an Elsa doll, the soundtrack, and Elsa’s wig. We danced and sang together.

This was the brief period following her diagnosis when we had not initiated the ketogenic diet, a diet which is devoid of nearly all sugars and carbohydrates. Christmas of 2013 was the last time Iris ate any substantial amount of sugar or sweets. She ate her last gingerbread man for the foreseeable future.

The simple things such as listening to your child sing should be truly enjoyed. Time passes all too quickly. I can tell you now that the progression of this condition is real. I would give anything to hear my daughter sing again, even if she were to sing the lyrics to “Let It Go” daily a hundred times over.

My daughter will likely enjoy Frozen long after other children will have forgotten and outgrown the film. This disease will essentially keep my daughter a child even as she ages.

We will cherish her smile and everything about her for however long she exists on this Earth.

Despite everything, I hope I will watch Frozen over and over for many more years. To do so would mean that my daughter is still living. Hopefully, she will not be suffering or in pain. As we face this progressive degenerative disease, I truly wish I could summon Elsa to freeze time. In my Frozen fantasy, Elsa could halt the progression of this wretched condition.

Everyday, my focus is on enjoying the here and now because today is all we truly have. Nonetheless, I will never forget my daughter’s sweet singing and our very Frozen Christmas. I will also always cherish when friends came to serenade my sweet girl with a truly touching Frozen medley. Iris’ sheer joy on this day was a true gift. The value of that pure joy is immeasurable.